Newborn Screening Strategy Summit and Awareness Campaign

Newborn screening is rapidly changing

0

5

10

15

20

25

30

35

40

45

<10 10 to 19 20 to 29 30 to 39 40 to 49 50 ormore

2001

2012

Number of Conditions Screened

# of States

But…. • We in this room are

intimately aware of these changes, the complexities inherent making these changes happen in a rational way across all states, and magnitude of effort involved in implementing a comprehensive program of screening, follow-up, and treatment

• For us, this is our world

• For everyone else….

Public Awareness • ACOG, AAP, IOM, ACMG, APHL,

MCHB, CDC all recommend educating expectant parents about NBS

• But implementing these recommendations is highly variable

• Research consistently shows that many parents are generally unaware of NBS

• Especially true for minority and low-income parents

• If aware, limited to “the heel stick” or “the PKU test”

• Lots of info on the web, but you have to want to look for it

North Carolina Brochure

• Most states have a brochure • Generally not read • Suboptimal readability • Often gets lost in “the packet”

Public Acceptance

• Screening is mandatory in most states

• Very few parents object

• Despite lack of awareness, studies show high levels of public acceptance

• As information becomes more uncertain with less clear benefit, acceptance is reduced

Do We Have a Problem?

• Most parents say they would like to know more about NBS and sooner

• Distribution of materials depends on provider and setting

• Role of provider in calling attention to NBS is probably important

• Controversies over dried blood spot storage after NBS have the potential to spill over and affect the NBS program

Goals for NBS Awareness Campaign Strategy Summit

• Consider strategies for improving parent awareness and continued support for NBS

• Consider strategies for expanding active provider involvement in public awareness

• In all cases, think about focus, audience, messages

• Provide input for CDC and APHL to consider in planning the 2013 50th anniversary campaign

• Think beyond the campaign to other awareness goals and strategies

Developing a Plan

• Partners within and outside of NBS were convened to plan a campaign to inform and educate the public about newborn screening, maintaining and increasing acceptance of newborn screening among parents.

The Goal

The campaign to inform and educate the public about newborn screening in order to maintain

and/or increase the understanding, acceptance, and follow-up about of newborn screening

among parents.

Potential Audiences

Expectant Parents

Health Care Professionals

Policymakers General Public

Calls to Action for Each Audience

Expectant Parents:

Ask about screening and

results

Health Care Professionals:

Talk with parents, promote benefits

Policymakers: Support

screening in states

General Public: Support

screening

Prioritizing Parents: A Look at Their Journey

I have not heard of newborn screening, nor do I know what it is about.

•Awareness

I have heard about it and may ask my doctor or go check it out next time I go online.

•Education, affirmation

I know my baby will be screened at the hospital and believe that is a good thing.

•Reduce barriers, provide tools

Knowing my baby is screened is important to me. I am going to check with my OB about what my baby will be screened for and ask at the hospital to make sure the tests were done.”

•Support

I know it is important to ask my baby’s pediatrician to review the results with me and if the test reveals anything I need to follow up on, I will get a referral for further testing.

•Reinforce

Parents

• Value of the program – Newborn screening saves lives by detecting

problems early and getting babies to appropriate care.

• Value to parents – Your child is going to get a health check-up at

birth. Make sure you ask the doctor for the results.

– You ask about your baby’s height and weight. Do you know your baby’s NBS results?

Parents

• Early detection

– Your child’s newborn screening – a simple heel prick test – helps your doctors see medical conditions before anyone else, giving you information that can help save your child’s life.

• Early treatment

– Newborn screening allows babies to get needed treatment which is important to protect their health.

Health Care Professionals

• Value of the program

– Newborn screening saves lives by detecting problems early and getting babies to appropriate care.

– Early detection leads to early treatment, which can make a difference in the lives of your patients.

• Value to patients

– Talk with your patients about the importance of newborn screening.

Recommended Next Steps: Planning

• Create a draft logic model for a strategic visual capturing resources, activities, outcomes, and goal

• Gather additional insight into audiences

• Identify baseline data to collect for evaluation

Recommended Next Steps: Audiences

• Define specific call to action for each prioritized audience (e.g., what we want them to do)

• Refine definition of each audience for a greater level of specificity for message and outreach strategies

– Health care professional audiences can include OB/GYN, peds, RN, NP, etc.

– General public can be defined more narrowly with a specific call to action in mind

Recommended Next Steps: Messaging

• Expand messaging

– Overall value of the program

– Each “piece” (e.g., detection, treatment, outcomes)

– Different HCP roles

• Test messages with audiences through focus groups, interviews, or other form of qualitative research

50th-Year NBS Campaign 2013: A joint activity of CDC and APHL

2013 Campaign Audience

Target Audiences

Expectant parents and families

Healthcare providers

Policy makers

State and national media

Final audience choice and activities will be heavily depending on available funding

Planned Activities

Combined NBS Symposium APHL/ISNS

Planned for May 5-10, 2013

Located in Atlanta, GA

Focus will capture the 50th Anniversary

Site visits to GA State PHL and CDC/NSMBB

Planning to begin in June, 2012

APHL: Association of Public Health Laboratories ISNS: International Society for Neonatal Screening

Planned Activities

NBS 50Yr Celebration Exhibit

Newborn Screening artifacts and historical memorabilia

Customized and made transportable for a variety of relevant meetings

Planned Activities

NBS Celebration Book/Interactive Media

Highlighting the story of newborn screening

Parent/patient perspectives

Targeted to general public, legislative decision makers

Production costs; funding sources & needs

Dependent on campaign themes and messaging

Planned Activities

National NBS Commemoration Event

Location: Washington DC

Targeted to legislative decision makers

Scope and themes of event still being defined

TBD: number of people, attendee list, time of day, length of meeting, sequential activities

Date: Fall 2013, Washington DC

Funding , key speakers, spokespersons

Other Campaign Activities

Public Service Announcements

Television, radio, print, internet/digital media

Targeted to the general public

AIM: “Raise Awareness”; deliver a “Call to Action”

Creation of key messages for the campaign

Identifying “State Leaders” as spokespersons

Scope is highly dependent on Funding

Ideas & Themes Influencing Vision ***Still a work in progress***

1. NBS is a system of detection, prevention and protection

Multifaceted program

Not just a PKU test

2. NBS should be considered a standard of care

Represents one of many tests/evaluations performed on the newborn before he/she leaves

3. Program impacts newborns – and also families and communities

Ideas & Themes Influencing Vision ***Still a work in progress***

4. Equip parents with questions they should ask a healthcare provider

A public encouraged to seek out answers from HCPs will drive the need for awareness and more information

5. Equip physicians with message cards and information to respond to patients

6. Program impacts newborns – and also families and communities

4. Data beats rhetoric

Be accurate in messaging and statements

Ideas & Themes for Messaging ***Still a work in progress***

Newborn Screening is your baby’s first test

… Get the facts from your healthcare provider

Over 12,000 newborns were identified in 2009 from early detection and intervention of NBS

… Know your baby’s result

Newborn screening is part of routine care for your baby

… Expect it, become informed

Summary Awareness about newborn screening is low among virtually

any audience you can think of

Parents say they would like more information about NBS

Some people are concerned that increasing awareness could have a counterproductive effect

But, the benefits of increased awareness (hopefully leading to informed acceptance of NBS rather than passive or unknown acceptance) probably outweigh the potential cost

How we go about the campaign(s) will be important

Lots of ideas and big plans for 2013

Evaluation of effects will be important

The campaign is just the beginning